Monday, 17 February 2014

Frustration of "normal" results and update

Frustration of "normal" results

I remember the appointment in which I was first diagnosed with ME/CFS- the doctor started by saying 'according to your test results you are a very healthy young lady', I remember my heart dropping, thinking I was being disbelieved and I wasn't going to get any answers, but then I received a diagnosis of CFS (it's not currently possible to test 'for CFS', it's a diagnosis of exclusion so everything they test for comes back normal by definition) and remember actually feeling relieved. I didn't know then what it would mean for me, I was just pleased to finally have an answer (of sorts), it felt good to finally have an explanation for why I had been feeling unwell for so many months.

I've had lots of tests come back normal over the years- some I've desperately wanted to come back normal, some I've expected to come back normal, some have been unexpectedly normal and on occasions hearing 'normal' has been frustrating and disappointing.

I have recently had my ultrasounds (abdomen and Doppler ultrasound of liver and portal system) and to my absolute dismay they were normal. I just cannot believe with the severity of my abdominal pain and nausea, my inability to tolerate supplements/some foods, and the amount of weight I have lost, that neither my gastroscopy nor my ultrasounds have shown anything wrong. I just want someone to be able to tell me what's wrong and what they're going to do about it. I really do feel that my weight and nutrition are part of why I'm not improving/am continuing to deteriorate at the moment, so I'm desperate for someone to be able to help!

It's so annoying to hear 'normal' when for once you just want them to find something fixable. I remember when I was found to be iron deficient and severely vitamin D deficient at one point- I was so hopeful treatment would lead to an improvement, sadly it didn't, but it's strange to actually want specific problems to be found, but it's because I want to be fixed, I'm desperate to get better. I've been tested for lots of conditions over the years, as my symptoms have accumulated and morphed; some potential diagnoses have seemed to fit my symptoms really well and I've thought everything was going to fall into place and things were going to be fixable.. Sadly it's never worked out.

It's very difficult to be so broken whilst also currently unfixable. 'Normal' is not always nice.


Well, where do I start...

Last time I did an update I had just had my gastroscopy and was in the process of taking time out from Uni.

I came down with a bad cold/infection soon after my gastroscopy, so got back to my parents home having left Uni and barely left my bed for a week; I felt incredibly unwell. I was meant to be returning to my Uni-home for a few days the following week for a psych appointment and my ultrasounds but wasn't well enough to travel in time for my psych appointment so I asked her to ring me and I updated her on what had happened. I did manage to get to my ultrasounds thankfully.

It made me wonder how ME/CFS sufferers are meant to know whether they have a cold or the flu when I have every symptom of the flu apart from sneezing on a daily basis...?! I'm fairly sure it was just a cold/sinus and throat infection on this occasion, but it did make me wonder.

I have also been in contact with my dietitian. I am simply unable to tolerate any supplements, so am having to attempt to put on weight through food alone. At the moment it's going ok, but I'm not really making much progress. I have to weigh myself weekly and ring my dietitian in 4 weeks time, or earlier if my weight drops at all. I'm not really sure how I'm going to get back to a healthy weight without any supplements to help, but we'll see.. Hopefully things will pick up and I'll start to see some real sustained progress.

The cold has caused a further deterioration in my condition. I'm now spending a lot of days in bed with evenings downstairs on the sofa. I'm requiring a lot of help from my mum who brings me food and drinks regularly. I can no longer shower because of dizziness/problems being upright. Bathing is difficult, exhausting and exacerbates symptoms, but is at least lying down and I can take as long as necessary. Life has got really quite challenging. But I've had a couple of meals out in recent weeks and have had a couple of days where I have spent time with friends.

I 'managed' a trip down to stay with my grandparents and brother (with my mum), which has been nice so far. I say 'managed' because I ended up awake in agony basically all night (<1.5 hours sleep) the night after the journey because of massive overexertion (being sat up on my scooter, without the backrest, for hours and I had a bath before travelling). But it's been nice to see family and have a change of scene, and a friend came to see me yesterday which was really lovely. I have had a day in bed today, partly because I'd had the evening of travel, night awake and then the day with my friend so was in a bad way and in need of rest, but also to rest ready for tomorrow (well technically today..) because I'm going to a spa for a facial and to sit in the hot tub/lie on the loungers which will be nice. I probably won't be able to swim much but I'm sure it'll still be a nice day. I feel in need of some pampering. I've had a bath tonight ready to go out tomorrow but am now lying awake in pain as a result. You just can't win with this illness.

My temperature control is now completely broken which is proving difficult. At home I have a fan by my bed for when I overheat but I don't here. I'm constantly changing from summer pyjamas to fleecy winter ones because one minute I am burning up lying uncovered, the next minute I am freezing cold despite being wrapped in a duvet.. it's all very peculiar.

I'm still waiting to hear about my falls/faints referral and haven't heard back about my PIP claim at all yet (I checked and they have received my form). Things are looking quieter at the moment appointment-wise over the next few weeks which is nice, apart from it means I don't get to see my Uni friends which is a shame.

I can't think of anything else at the moment so take care everyone and I will update again fairly soon!

Thursday, 6 February 2014

Time to Talk Day- mental health awareness

It's Time to Talk day in the UK- raising awareness and encouraging people to speak out about mental illnesses.

Yes, this blog is normally exclusively about illnesses that I personally suffer from. Yes, Time To Talk is about mental illnesses, and no, I have not actually been formally diagnosed with a mental illness at any point in my life. I do, however, have people close to me who suffer from mental illness, I currently see a clinical psychologist because of the psychological affects of my physical health condition, I have a very close friend who is a mental health nurse and I do feel that the stigma of mental illnesses desperately needs to be broken.

1 in 4 people in the general population will suffer from an episode of mental illness at some point in their life. This is even higher among those with chronic illness (1 in 2 or 3 depending on which stats you read). Nobody is immune to mental illness, and it's something no-one should feel the need to hide. Mental illness should be given the same respect that physical illness gets, after-all, people do die from mental illness!

I have made no secret of the fact I have had depressive symptoms over the last few months, and maybe I have at times had diagnosable Clinical (Situational/Reactive) Depression, although this has not been diagnosed to my knowledge. My physical health has challenged me to an extent I have found very difficult to cope with mentally, and I'm not ashamed to say that. I do remember questioning whether I should mention my involvements with a psychologist on my blog though, and the fact that I even questioned that shows that there is still stigma surrounding mental illness. I remember feeling appalled by the suggestion that I had an eating disorder, and yes that was partly because it was wrong and I didn't want to be misdiagnosed, but it was also partly because I was scared people would think it was my own fault and putting on weight was under my own control if I had been diagnosed with an ED. If I had an eating disorder it STILL wouldn't have been my fault and it would be EVEN LESS under my control. The situation would actually be even more serious than it is as it stands, because I am able to co-operate with my medical team and openly discuss my difficulties; if I had anorexia or bulimia, I wouldn't necessarily be capable of that until I had psychological therapy.

I remember going into my first psychologist appointment and admitting I was feeling desperate and saying I felt like I couldn't cope with any more, I was at the end of my tether. Over the next couple of appointments we discussed the fact that I had become very oversensitive, irritable, wasn't feeling myself, was deeply upset about my situation, and felt out of control of my life. I remember being asked whether I felt suicidal, which I never have. I remember the fear in the lead up to my first appointment that I would be diagnosed with a mental illness if I admitted how I was feeling. I knew this was my opportunity to be honest and get some help because I had noticed my mood slipping over the previous few weeks, as it has done on a couple of occasions in the past, but the idea of being diagnosed with depression scared me, for several reasons. I was scared about who I'd tell, what I'd tell them and how they'd react. I was worried people might judge me or treat me differently. I was worried about it going on my medical record and doctors putting symptoms down to mental illness in the future, or taking the symptoms of my physical illness less seriously because they thought it was partly caused by mental illness. I was concerned current or future problems would be wrongly deemed psychogenic and not fully investigated or appropriately treated. I was scared my future doctors would have a bad attitude towards patients with a history of mental illness. I was scared it would mean my current doctors would see beyond the bubbly, happy, upbeat personality they nearly always see. I shouldn't have had those fears. But those fears exist because of the current stigma surrounding mental illness. It's so important that this ends because people must not be prevented from seeking help!!

Psychogenic symptoms/diagnoses are very misunderstood by both some patients and some medical professionals. These diagnoses DO NOT mean you are making it up. The symptoms are very real. The patient isn't a malingerer. Just because the symptom is 'in your head' doesn't mean you're saying something is there when it isn't, it simply means your brain is creating a symptom without physical cause. The symptom is just as real, just as severe, and just as worthy of medical attention. A diagnosis of Atypical Facial Pain vaguely floats around in my notes, even though the pain has actually been diagnosed as being a direct result of my CFS. AFP is largely believed to have a psychogenic cause, I could kick up a fuss and probably get this diagnosis removed/changed, but why?! Practically all chronic pain is psychogenic to some extent- it's our brain wrongly creating pain and learning pain pathways that's the problem. It's unlikely that there's constantly occurring physical damage. I take gabapentin for my facial pain, it down-regulates signals from the brain. It works, and that's all that matters. It doesn't stop the facial pain completely, but it dampens it down to the point where it has little affect on my life. Most pain medication works in the brain. The sensation of pain is created in the brain. All pain is 'mental' to some extent.

I don't feel qualified to discuss what depression feels like because I've never been diagnosed and I've been reassured that my feelings are totally understandable, to be expected and in proportion given what I have been going through in recent months. I therefore feel that it would undermine people's experiences of true severe overwhelming depression. I would, however, encourage people to watch this video which describes what depression is like, using fantastic imagery of a black dog. Obviously there are lots of other mental illnesses, but depression is common and is the one I have most experience with.

I do know how it feels to be a close friend to someone with severe depression though. I have a friend who has had suicidal thoughts in the past. I have been the friend on the other end of the phone/computer with someone sobbing at me feeling utterly desperate, and I didn't know what to say or do. But I listened, I didn't judge, I tried to help my friend see things in perspective, I urged my friend to seek help, I stood by her, and I'm happy to say that she still has her ups and downs but she is doing well recently, although I'm aware that it is a constant battle. I'm sure she will read this and I hope she knows I will always be here if she needs someone. I'm sure I've said the wrong things at times, and maybe there were times when I could have done more, but nobody is perfect. It's hard to be the other end of the phone when someone says they don't want to go on living and then hangs up and won't answer the phone again and you're hours away, but I don't hold my friend responsible for what they put me through, it was the fault of the illness, not the sufferer. That's what friends of those with depression must always remember. We just have to try to stand by them best we can until we get our friend back!

Mental illness is an invisible illness, just like physical invisible illnesses and I therefore feel that we face many of the same challenges. It can be hard for others to understand and appreciate what we're going through because there are often no outward signs- we can look perfectly well at times. The illnesses can be hard for non-sufferers to understand and relate to, they simply don't know what it's like, which can lead to the sufferer feeling alone and isolated. People can struggle to know what to say, and they sometimes say the wrong things, which can sometimes lead them to say nothing. Knowing people care, are there for you and helping you to feel loved and appreciated is really helpful and helps to guard against major loss of self-esteem which often results from these illnesses. Our illnesses isolate us at a time when the support of others is incredibly important. Our conditions are often unpredictable and can be debilitating, and we may need others to take them into consideration. I therefore feel that all those that suffer from long-term illness, physical or mental, can provide empathy to one another to some extent.

A lot of ME/CFS sufferers are always very vocal about the fact CFS is not a mental illness, and I do totally agree, I think a physical cause will be found and certainly there are physical changes demonstrated to result from the condition, but I think people should be careful about what they say. We are all in this together! Those with mental illness do sometimes get CFS-like symptoms, and they can be just as debilitating for those people! I totally agree that we need those that are being researched under the label 'ME/CFS'  to have ME/CFS and not a mental illness, but they also need to have not been misdiagnosed when they are suffering from other conditions either. Plus, we need to be careful not to stigmatise mental illness further, particularly given that a lot of people with ME/CFS will be suffering from co-morbid mental illness as a result of the condition- it is debilitating, life-changing and often painful- the risks are therefore high. We need to be careful not to give the impression that CFS would be a lesser condition if it were a mental illness rather than a physical condition. Both are equal. Just because something is physical doesn't make it more serious, more real or more debilitating.

If anybody ever needs to talk, with problems big or small, or you just think I might be able to understand what you're going through, do feel free to message me over on my Facebook page (, I'm always willing to chat and keen to hear from people. Support and take care of those around, but most importantly look after you! Seek help as necessary, don't suffer in silence and hopefully one day the stigma of mental illness will be a thing of the past and it will be given the same respect and treated with the same seriousness as physical illness.